“Anything that puts me in control is a positive. It’s the not knowing that’s unnerving.”

During the course of 2020 we were delighted to be asked by National Voices to contribute to their latest report 'Patient. Adjective. Noun.' The report was instigated by NHS England and Improvement (NHSE/I) who asked about people’s experience of waiting for care to be explored.

The project started shortly after we entered the first 2020 lockdown, a profound time for the dystonia community, as it was during this time that many more people living with dystonia were left waiting for care.

Photos of Gemma and Graham

As part of the research for the report, National Voices carried out over 20 interviews with people with a range of physical and mental health conditions. A huge thank you to Gemma and Graham who kindly gave up their time and shared their experiences about waiting for care with dystonia as part of these interviews.

The published report has compelling insights and suggests practical solutions for issues which we hoped would be used by NHS England as evidence to prompt system and practice reviews to improve standards.

Click image to see full page PDF.

It is therefore a fantastic outcome to see that NHSE/I have responded to this work by publishing Clinical Communications Standards which set out how a decision to postpone or rearrange treatments needs to be communicated with patients.

The documents explicitly reference National Voices influence on the work and set out principles that resonate strongly with the priorities included in the report:

  • a single point of contact;
  • a reminder for people to reach out if things get worse and;
  • signposting to alternative sources of support.

It is pleasing to know that the voice of the dystonia community has been included in this important piece of work and we would like to take the opportunity to thank National Voices for involving us. It is vital that we raise awareness of dystonia on a larger scale across the NHS and it is through our work with organisations such as this that we are able to do exactly that.

Read the NHSE/I Clinical Communication Standards

Read the full report

Published: 21st January 2021.